Comments:

02/12/99 21:44:34

Name: Debra Denzer	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes, 85%	What's your age/gender?: 46, female	Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no	What do you live? List state, area or country: ohio, mt. vernon	Is it alright for others to e-mail you?: yes

Comments:
I found out I had PKD twelve years ago. Since then I have maintained functionality of my kidneys and liver, but the size of the organs has increased tremendously. In fact I'm running out of space. Digestion is problem and sleeping is uncomfortable. I expe ience some pain. I've recently been told by my physician that the size of my kidneys and liver can be reduced by laparoscopic surgery without effecting funtionality. Has anyone experienced this type of surgery? If so, I'd like to hear from you.

02/08/99 02:15:41

Name: Loretta	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: my relatives have	What's your age/gender?: 28/f	Are you on Dialysis/what kind?: n/a
Do you have a kidney transplant?: they wont let her	What do you live? List state, area or country: fl, usa	Is it alright for others to e-mail you?: yes!!!

Comments:
i was wondering how i can get my cousin on a transplant list..she will not last much longer without one...and so far her doctors will not help...they say she has to get worse...i would really appreciate any help from anyone!!

02/07/99 00:37:24

Name: Leslie	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes/not sure	What's your age/gender?: 41/F	Are you on Dialysis/what kind?: No
Do you have a kidney transplant?: No	What do you live? List state, area or country: NH	Is it alright for others to e-mail you?: please do

Comments:
I was diagonsed at 17. My 3 siblings were diagnosed much later...my older brother is on dialysis. I'm glad I found this site. It's a comfort to know I am not alone.

02/03/99 18:25:12

Name: Mike	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: Yes/55 pct	What's your age/gender?: 43/M	Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no	What do you live? List state, area or country: Hawaii	Is it alright for others to e-mail you?: YES

Comments:
Have been aware of my PKD for 15 years. No problems yet other than slight back pain. Creat is 2.2 currently.

01/31/99 23:55:13

Name: Amanda Green	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: Yes and 100% function	What's your age/gender?: 19/ F	Are you on Dialysis/what kind?: No
Do you have a kidney transplant?: No	What do you live? List state, area or country: Australia	Is it alright for others to e-mail you?: Go ahead...

Comments:
This is a great page, very infomative. Its kind of comforting to know I am not the only one living with this disease.

01/31/99 14:20:35

Name: ihab adel	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: Yes, 80%	What's your age/gender?: 30/ male	Are you on Dialysis/what kind?: no
What do you live? List state, area or country: Egypt	Is it alright for others to e-mail you?: please do

Comments:
I think it great all the effort done by Beth and it also great for us all to share any useful information

01/30/99 18:59:17

Name: Pam	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes/?	What's your age/gender?: 42/female	Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no	What do you live? List state, area or country: Barbados	Is it alright for others to e-mail you?: yes

Comments:
I've recently started seeing much blood in my urine, and I'm now on the antibiotic Noroxin. everything's quite scarry!!!

01/28/99 09:25:12

Name: Vera Mckenzie-Smith	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: Yes I do. About 50%	What's your age/gender?: 49 female	Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no	What do you live? List state, area or country: Canberra. Australia	Is it alright for others to e-mail you?: I would love to hear from anyone

Comments:
I would love to hear from anyone in Australia. Also anyone who has any ideas about how to keep ESRF at bay. I know it has a lot to do with genetics etc but there is no harm at trying to do something that will help. I feel good at the moment but who knows how long that will last!!!

01/25/99 01:10:53

Name: Steve Mellenthin	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes - 25%	What's your age/gender?: 54 / male	Are you on Dialysis/what kind?: No
Do you have a kidney transplant?: No	What do you live? List state, area or country: SW OH	Is it alright for others to e-mail you?: Yes

Comments:
Diagnosed 25 years ago this Mar. Only problems until recently were slightly hard to control blood pressure. Now kidney size is causing problems - primarily pain and crowding in my abdomen. Creatinine is about 3.8. I have had to curtail my activities c nsiderably to avoid hurting myself. I seem to bruise and rupture cysts easily. I am seriously considering having laprosco[ic cyst removal - has anyone out there had this procedure? If so, please email me. Also had a problem with my aortic valve pop up last year - probably related to PKD. Wanting to chat with anyone about aspects of this disease.

01/18/99 04:04:43

Name: Kim	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: Yes - Normal function	What's your age/gender?: 36/Female	Are you on Dialysis/what kind?: No
Do you have a kidney transplant?: No	What do you live? List state, area or country: IL - Chicago area	Is it alright for others to e-mail you?: Yes

Comments:
I was diagnosed at age 29 during an ultrasound for something else. Fortunately, my kidneys are continuing to function normally.

01/14/99 20:25:41

Name: Mirna	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes about 66%	What's your age/gender?: female	Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no	What do you live? List state, area or country: Addison, Texas 75001	Is it alright for others to e-mail you?: yes, I would very like that

Comments:
This is my first time that I go in public because Iam beggining to fill like a frick. I do not know if there are more people who feel this way in times.

01/13/99 03:12:04

Name: Angel	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes 49%	What's your age/gender?: 32 female	Are you on Dialysis/what kind?: not yet :)
Do you have a kidney transplant?: no	What do you live? List state, area or country: Florida	Is it alright for others to e-mail you?: yes

Comments:
Hi Beth! Nice to meet you! Thank you for setting up this website! I have met 2 people already and really enjoy sharing our PKD stories. Thanks for the chat room, although cant seem to find anyone there. I came on tonight at 10:00pm but had missed you. I will tr to catch you next tuesday. I am usually on my computer 9pm -11pm some nights so I might catch you soon sometime! Thanks again and God Bless you! Angel

01/06/99 01:10:12

Name: Linda	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes-still normal functioning	What's your age/gender?: 44/Female	Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no	What do you live? List state, area or country: midwest	Is it alright for others to e-mail you?: yes

Comments:
I learned that I had pkd 4 years ago and have been searching for information ever since. I just found this site. It is so nice to be able to communicate with others who have the same problem. My initial doctor was a g.p. and knew nothing about this diseas . I am currently looking for nutritional and dietary information regarding this disease. Thanks!

01/01/99 03:09:13

Name: Gail Bell	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: Brother does. None	What's your age/gender?: He's 38	Are you on Dialysis/what kind?: Yes/
Do you have a kidney transplant?: No	What do you live? List state, area or country: Georgia,South,USA	Is it alright for others to e-mail you?: Yes

Comments:
My brother has polycystic liver and kidneys. Lost kidneys about 5 years ago. Needs help desperately for hope of a kidney transplant and help with medical and drug expense. Any suggestions?

12/29/98 22:06:37

Name: Allen	My URL: Visit Me
My Email: Email Me	Do you have PKD? Approximately how much kidney function do you have?: no
Is it alright for others to e-mail you?: yes

Comments:
I am do research for a family member who has PKD ... any info would be appreciated.

12/10/98 04:04:19

Name: Kate Moore	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: Yes. Normal.	What's your age/gender?: 21	Are you on Dialysis/what kind?: No.
Do you have a kidney transplant?: No.	What do you live? List state, area or country: Rehoboth Beach, DE	Is it alright for others to e-mail you?: Yes

Comments:
I was diagnosed with PKD when I was 17. I'd love to hear from anyone with PKD. I am also interested in hearing from women with PKD who have become pregant. Hope to hear from you soon! :)Kate

12/07/98 23:25:31

Name: Tom Kriehn	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: Yes - 50%	What's your age/gender?: male - 46	Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no	What do you live? List state, area or country: Eastern NC	Is it alright for others to e-mail you?: Yes

Comments:
I've known I've had PKD about 3 years. My son is 14 and lives with his mother. Neither know I have PKD. I'm wondering if I should tell him. Since there is no cure and he'll not be able to get insurance later, I'm leaning toward not telling him. Any th ughts?

12/07/98 19:41:42

Name: Wendy Pepice	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: Yes. Undetermined	What's your age/gender?: 32 Female	Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no	What do you live? List state, area or country: CT USA	Is it alright for others to e-mail you?: yes

Comments:
I was diagnosed at 27. I knew that I had it because I was tested at 11 and it was determined that I had cyst. My Father had it, he transplanted and although it was sucessful he died to comlications. My oldest sister also had it she died from a complic tion at the age of 27. I have learned to take better care of myself as a result of what I have learned of this disease. I plan to be around for the CURE.

12/06/98 05:31:17

Name: margaret jacobsen	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: Yes . don,t know???	What's your age/gender?: 73yr F.	Are you on Dialysis/what kind?: No
Do you have a kidney transplant?: No	What do you live? List state, area or country: Seattle,Wa.	Is it alright for others to e-mail you?: yes

Comments:
I was diagnosed age 50 when I thought I had gall bladder prob. as had my mom & 2 sisters. Ultrasound showed large cysts in my left kidney and liver. 3 yr later many cysts in both kidneys liver. a yr. ago many small aneurysms at the mid-brain were found. Ive been told to follow the usual treatments, BP checks and wait. I also have osteoarthritis at times severe, and I am afraid to take NSAIDS. Fibromyalgia also is treated with many different meds.in my attempt to have energy to do more things. I am a family nurse practitioner and am interested in learning about helpful diet. I eat very little meat, mostly chicken or fish and tofu . veggies & fruit. Thanks for your help. I do water aerobics and go to our pkd support group.

12/01/98 20:20:20

Name: Donna Bartholomay	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes, not sure	What's your age/gender?: 34, female	Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no	What do you live? List state, area or country: Kissimmee, Fl.34745

Comments:
I was wondering how stress and precription pain medication effects pkd.

11/26/98 13:10:17

Name: Cecilia Maida	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: almost normal	What's your age/gender?: 39 & female	Are you on Dialysis/what kind?: not yet - shortly
Do you have a kidney transplant?: no	What do you live? List state, area or country: California	Is it alright for others to e-mail you?: yes

Comments:
Diagnosed with PKD of kidneys at 19. Now 39 and have in liver too. Off on disability from severe pain I have suffered with almost 20 years. Recently diagnosed with cysts in sacrum. Would like to know if any others have in sacrum? Pain is severe from cysts in sacrum?

11/26/98 01:27:25

Name: Denise	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes I do not know	What's your age/gender?: 51 female	Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no	What do you live? List state, area or country: Klamath Falls, Oregon	Is it alright for others to e-mail you?: yes

Comments:
I am looking for people who are using diet and nutrition to improve their kidney fundtion and hopefully slow the progression of this disease. I just found out accidentally a few years ago I have this disease. I am now being retested to see how much the cysts have grown.

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